MORE choice, MORE control, MORE life

With Lord Ashley reintroducing his independent living bill, and the government’s independent living review due to report early this year, John Pring visited one young, disabled woman to investigate the impact on her life of a lack of support from her local authority

Sarah was at a party, surrounded by people she didn’t know. “So,” one of the male guests asked her, “what do you do for a living?”

An unemployed university graduate in her early 30s, with a Masters in marketing, Sarah’s* life increasingly revolves around a desperate struggle with her local authority to secure the level of support she needs to live independently – not a great topic of party conversation.

“I never know how to answer that question,” she says. Instead, such conversations quickly become focused on her impairment. “If I don’t talk about it, I have very little to contribute. I’m not working so I tend to feel devalued.

“The only thing I seem to have to offer is this really horrible background of fighting with the local council to try to get some kind of life.”

Sarah says her life is “constantly consumed” by this struggle to secure the support she needs to live independently. The substandard package of support she survives on affects every part of her life: work, food, leisure, relationships, personal care…

Sarah currently receives one-and-a-half hours of support a day from her council, for washing, showering, drying her hair, laundry, food preparation and cooking, never mind all her other domestic and household chores. She needs support with all of this because of the dexterity issues caused by her joint condition.

“It usually allows time for some personal care and a bit of food prepara­tion, but not much else,” she says.

Sarah is a vegan and loves to cook, but the lack of support she receives makes it almost impossible to eat healthily. She has to shop online but can’t peel, chop or prepare vegetables herself, so she usually ends up throwing the contents of a tin in a saucepan. “Basically, I slum it,” she says. “It’s getting-by food.”

Indeed, she finds it so difficult to cook and eat healthily that she was once hospitalised with malnutrition.

The miserable support package gives her little or no time for leisure, social activities and shopping, although it is supposed to include one-and-a-half hours a week for leisure and two hours for “community amenities” (whatever they might be). It’s clearly not enough to live any kind of independent life.

Direct payments (and the possibility of individual budgets in the future) are an irrelevance for her. Because she has so few hours of support, the extra administrative burden is not worth the effort, particularly as the council has refused to provide any administrative assistance.

The life she does have is by necessity centred around her home. But home is a cramped, rented, one-bed flat. There is so little storage room that the many papers and documents she has collected through her struggle with the council are collected in cardboard boxes that litter the floors of her living-room and bedroom. There is one bookshelf in the living-room, full of vegan cookbooks and business manuals.

She has been assessed as needing a manual and an electric wheelchair, but there is not enough space for either, which makes getting around, both in and out of the flat, even harder, particularly on those days when she is in so much pain that she can barely get out of bed. She spends nearly all day every day in the flat, but can’t spend too long using the computer because of her condition. She needs a walk-in shower, and the kitchen is cramped and inaccessible, too. She clearly needs more accessible accommodation, but the council won’t help with that, either.

“Sometimes I get very, very down,” she says, “and I really, really worry about what will happen to me in the future. I’m pretty isolated now. I am just worried that I will get to 80 and I will have lived my life like this the whole way through and I will have nothing to look back on. It really scares me.”

The idea of a relationship, of having children, is another aspect of her life that has been made impossible by the lack of support.

“I long for that. I have always thought I would find a partner, settle down, have children and live happily ever after. I think my current situation, not getting the support I need, not being seen to be independent and in control of my life, is a very, very unattractive thing to prospective partners.

“Over the last five years, many of my friends have got married and started having families. There are a lot of people in my life who now have children. I don’t wish to miss out on that but time is passing me by.”

Even if there were time left over from her support package, what could she do with the supposed one-and-a-half hours a week of leisure time, she says, shaking her head. She can’t style her own hair, and there is no time in her support package to allow someone to do that for her. She can’t put her own shoes on and so she usually just wears sandals, even in the middle of winter. She is forced to buy clothes online because of the lack of support, missing out on the social interaction she would gain from shopping locally, but not many of the main retailers sell online, and choosing clothes over the internet is difficult, particularly when many fasteners and fabrics such as lycra are difficult for her to use.

There’s no allowance for ironing in her package, either, even though she can’t do it herself. So all her clothes stay unironed.

Sarah says the council seems to expect her to live her life electronically, but there is only so long she can spend on the computer. She has already damaged her wrists and fingers from over-use of the keyboard and the telephone. Besides, she prefers to keep in touch with people face to face. Why should she be restricted to email and social networking sites?

As for work, she is on incapacity benefit and has been since 2001, but has been trying unsuccessfully to secure support from the council to set up her own business for more than four years. She mistrusts the government’s current process of welfare reform, which she says is all “all backwards”. Without an adequate support package, how can the government expect disabled people to secure jobs? “If you can’t feed yourself, dress, or prepare for work at home, how can you be expected to work?” she says. 

There is a real risk, she says, that disabled people will be pushed into work without an adequate base of support at home.

As for the future, she says she doesn’t have one. “I can’t plan anything because I’ve got no security because I don’t know what’s going to happen. I don’t know where to go from here.”

All she wants, she says, is support that recognises her individuality and independence.

“I am generally a very private person and one of the things I find really, really hard, is that the council have been so intrusive and yet have offered very little in return. To me that’s really degrading. It felt like torture at times.”

The council also refused to let her tape-record meetings, even though she is not able to make notes herself. “It’s another way of keeping control, by restricting my ability to gain access to the resources I need, which would deplete their funds further. They are not allowing me to have any control over my life. I don’t think they respect me as the individual I am.”

As for choice in her life, she says it is non-existent. “By default, I have had a lot of choices removed from my life simply because I am not able to access the things I want to access. I feel that my identity is being eroded. At times I am in complete despair and I wonder what the point of all this is, what the point of living is. What am I getting out of life, what am I giving back to life?

“When I left university, I had my whole life ahead of me: starting my career and making a success of my life. But there isn’t room for ambition now – I’m just in survival mode.”

She says the system is more about “value-for-money, aka cost-cutting and targets” than anything resembling the promotion of independence.

“People seem to be expected to vary their needs in line with their council’s funding,” she says. “Our needs are real and we definitely need help. They are not luxuries. They are just the basic things for being able to live your life.”

As we near the end of our conversation, Sarah takes out a list she has written on the computer and printed out. It details all the things she used to do when she was younger: sport, travelling, parties, visiting bars, shopping, the cinema. Nearly all of that is impossible now, thanks to her inadequate support package. She hasn’t been to see a film since January 2007.

“I am starting to forget who I am,” she says. “It takes me a while to think about it when people ask me and that’s really sad.”

*Not her real name